By Heather Mackles, RN, BSN

When the food you’re feeding your child is making them sick, what do you do? One mother, a member of The Leaky Boob Community group admin team, shares her family’s journey with food allergies and how it has changed them. A registered nurse, the author shares some points for families on potential signs for allergies and how to proceed.

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It started with a crying baby, a “sensitivity” to my breastmilk, and a transition to soy formula under the direction of our pediatrician. Then it became vomiting, weight loss, and a hospitalization. Eight years later, we’re dealing with food anxiety, rebelling, and a struggle with autonomy. Somewhere in there was a major food overhaul.

Food allergies.

I am a parent of a child with multiple food allergies. We wield EpiPens, Benadryl and a rescue inhaler. We see a pediatrician, dermatologist and allergist every few months. We are one piece of candy away from a trip to the ER.

Food can kill my son.

I was told while pregnant from a lactation consultant that babies rarely have an issue with actual breastmilk. Only babies with true milk protein allergies were unable to breastfeed due to the whey protein in breastmilk. My pediatrician agreed after we had several visits with complaints of horrible crying with no relief and constant diarrhea. He told me that my baby may have a sensitivity to my breastmilk and that it would be in my best interest to wean him immediately to soy formula. There was no mention of removing dairy from my diet first. Now knowing more than I did then, I probably could’ve tried removing all dairy from my diet and chances are strong that would have been a better option for my son. For more on breastfeeding a child with food sensitivities or food allergies, see this post here.

But I didn’t know then what I know now. I didn’t know how to fight and advocate for my son.

When we first got the diagnosis from the gastroenterologist, I made that first trip to Whole Foods. I was beside myself. I didn’t know what I was looking for. Then this saint of an employee came up to me, and asked if he could help me find something. I poured my heart out to him while he helped me navigate the store.

My child, who loved homemade fettuccine Alfredo (which starts with a stick of butter and a pint of heavy cream), now could not have anything that had the milk protein, casein, in it. It’s not a lactose-intolerance. He can’t just drink lactose-free milk and be fine. He can’t have any animal milks, butter, cheeses or whey protein. His reactions continued going up until his diagnosis had only been gut and skin related, but that doesn’t mean that the next exposure couldn’t affect his respiratory system.

The threat is very real.

My son can’t eat or have contact with:

Dairy

Gluten

Tree Nuts

Peanuts

Tomato anything

Nitrates

Fluoride

MSG

Artificial Colors

Preservatives

We now have to read every ingredient list for EVERYTHING. When he’s prescribed a medicine, or even if I go to give him over-the-counter medicine, I have to call the manufacturer and get the all clear that it does not contain dairy or gluten. Sometimes the manufacturer is closed, or won’t return my calls for days, but he needs the medication at that moment. So I have to take a deep breath, weigh the risks and benefits, pray, and give him the medicine. His allergy medicine prescribed by his allergist? I gave it to him for a month and couldn’t figure out why he was breaking out in hives and having diarrhea. It contained gluten as a main ingredient. Because his vitamins were cultured in milk, but they didn’t list it because they don’t contain milk, he had a reaction. Now he’s taking vegan vitamins to be sure they are dairy free. His allergies have evolved over the years, though he has yet to grow out of any, as many kids with one food allergy usually become allergic to other foods over time.

Every single thing that goes into my child’s mouth requires me to check the ingredient lists. Unfortunately, if something in it is milk-derived, it doesn’t have to list that according to the FDA. There’s a lot of ambiguity when it comes to artificial and natural flavors, colors and preservatives, and transparency is not required. So do I give him the food that should be okay and risk a reaction, or do I disappoint him and tell him it’s not safe? We play that game. Every. Single. Day.

Sometimes I hear him coughing in his room at night, one of his common early symptoms of a reaction, and the panic starts rising. “What did he eat today? Was it anything that we ate differently? Have I looked at our safe foods’ ingredient lists recently? Did they change their ingredients?” And then I mentally go back through everything he ate in the past 24 hours, because reactions can be delayed. His are usually around 8 hours after ingestion. Sometimes it could be anything, sometimes I may not even know for sure what he has eaten.

I cringe when other kids offer him food because he SO BADLY wants to take it, but he does good most days on refusing. Sometimes he slips, but I have to give him some autonomy. I cannot keep him in a bubble forever. He has had to learn how to resist temptation in the most evil of ways. Food is more than eating. It’s a social and cultural enjoyment. Good food brings people together and celebrations often center around food. Many people take offense even, including family members, when we say that he can’t have whatever they’re offering, because we aren’t sure of the ingredients.

My son experiences discrimination every time he’s on some sort of a team or in a group activity. I’ve heard such things as “We don’t accommodate for people with food allergies.” and “Can’t you just bring him his own snack to every game?” told to me by other parents, teachers, and team leaders. But there’s always that one parent on the team that texts me to ask me for suggestions on my son’s safe foods because they want to make sure he feels included. One parent who shows they care. They are the shining beacon of light, and by being able to share in team snack with everyone else, just like every other kid, you made his day. It warms my heart to see him so happy. And it makes me so angry when people blow off his food allergies like they’re nothing.

My child’s food allergies aren’t a preference, they are a life and death risk. I know it is inconvenient, my family lives with and accommodates those inconvenient risks every day.

Our safe restaurants include Mellow Mushroom and Disney restaurants. That’s about it. Going out to eat is another adventure. It takes a lot of time and energy, because we have to call ahead and make sure they can make something for my son that he can actually eat. He’s not picky by any means, but he does have his preferences, and most places either have 1-2 things on the menu he can have, or none at all. Like most of us, he wants to enjoy eating beyond considering whether or not it will make him sick. Most times, the restaurant’s employee we talk to on the phone can’t guarantee that they’ll have a meal free of his allergens. By the time we call around to 3-4 places we’ve selectively picked, we usually throw in the towel and make something at home. We make 95% of our food at home from the most basic ingredients. It takes too much time, planning and effort to go to a new restaurant, where most of the time, the employees are very poorly educated on food allergies and cross contamination. Fast food is mostly out of the question. We don’t even try there. If we need fast food, we make him a safe option at home.

Do I want to be this controlling? HELL NO. I want to let him eat whatever he wants, and I would cut off my left arm if he could just have one slice of birthday cake at another kid’s birthday party. But his diagnosis requires vigilance and I must provide that.

Still, I refuse to allow food to define my child. He is a smart, funny, easy-going kid. He’s never met a stranger and will hold a conversation with anyone he meets. He is good at acrobatics, circus aerial arts, and baseball. He just signed a modeling contract through a worldwide agency. His smile is infectious and that lights up the room. Food allergies are NOT who he is. He may have them, but they are not him. He is Ian, a boy who has food allergies.

And I stand in the background, ensuring he stays safe as he blossoms into his own person.

Right now, we take it one day at a time and we learn and grow with him. There will be more rebellion. There will most likely be more ER visits in the future. There will be times where he chooses to not bring his EpiPens with him because it’s not cool to have special needs. Hopefully that day, he won’t need it, as most days he won’t. Hopefully he won’t learn this lesson the hard way. But there will also be good friends that we meet along the way, and we will cherish them forever.

I went on to successfully breastfeed two more children. My middle child was breastfed until 18 months old, and my youngest is 19 months old and still breastfeeding with no end in sight. We introduced the top eight most allergenic foods at 6 months old under the direction of our (new) pediatrician and both of my youngest kids have no food allergies.

There’s a lot I wish I knew back in the day with my son that I know now. For new parents it can be overwhelming and scary. Most of the time I’m not scared any more, just vigilent. And I’m able to share what I’ve learned. There are boundaries to learn, together we can figure them out. In this post, another parent shares a few methods about food boundaries with her food sensitive child.

Want to know what to look for and what could be a warning sign of an allergy in your child? Here are some of the most common things to look for when evaluating for food allergies in children:

*If your child exhibits any of these symptoms, call 911 immediately as these are signs of a life threatening medical emergency.

They could encounter the allergen once and react to it, or they could’ve been exposed to the allergen 100 times before and all of a sudden start reacting to it. There is no telling when or how bad they’re going to react to the allergen, if their body chooses to react to that particular food protein.

Many life-threatening food allergy reactions (called anaphylaxis) happen to kids who did not know they had a food allergy. If you suspect that your child has a food allergy, please consult your physician for further allergy testing.

Living with the reality that the very nourishment that should sustain us, bring us joy, and lead to health could make our child sick, endangering their lives, isn’t easy. If you get to enjoy life without these scary obstacles, please be patient with those of us who must learn how to navigate them. If you are just discovering that allergies may be a part of your child’s life, you’ve got this. It may require a lifestyle change but you’ve got this. With community and information sharing you can be your child’s strongest advocate and learn how to navigate this terrain without it stealing your joy.

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Heather Mackles is a 32-year-old retired PICU RN, who is happily married to her husband, and stays at home with her three children, two dogs and an antisocial cat. In her minuscule amounts of free time, between changing diapers and homeschooling/unschooling her kids, she enjoys traveling, taking frequent trips to Disney, sewing, and critiquing medical TV shows. She believes in advocating for all women from all walks of life, and loves helping women achieve their breastfeeding goals.

It happens, nobody really wants to talk about it, fewer people want to hear about it, and yet it affects so many of us. ED complicates the most straightforward activities, creates more stress during a stressful season, and siphons our time, energy, and mental capacity to make sound decisions.

Elimination Diets suck. (What? You didn’t think I was talking about the other kind of ED, did you? Psh.)

I’ve been on some sort of elimination diet for over two years. First, it was because I was pregnant. I involuntarily eliminated most food for 5 months, then only added in what my incubating baby would allow me to consume after that. And what my unborn child wanted to eat was croissants and kombucha, in spite of my every intention of eating mostly protein, veggies and fruit. Then I birthed my baby and ate ALL THE THINGS. That was a mistake. Turns out, my son didn’t take well to many foods, even through breastmilk. After a few months, we regulated one of the meds he had to take for seizures, and I cut out wheat and dairy for starters. My son’s poop diapers improved a bit. I could easily blame the rest of his relatively mild GI issues and eczema on his meds, so I left it at that for a few more months.

Then he started solids.

Within weeks, it became crystal clear that not only was my babe intolerant of certain foods in my breastmilk, he wasn’t tolerating solid foods at all. He was diagnosed with FPIES, a rare food allergy. We ran every blood test. We tried every non-invasive alternative allergy testing method to help pinpoint possible triggers. He still reacted to my breastmilk, and it was getting WORSE. So, an Elimination Diet was the next stop on our journey.

I started small, became super strict about wheat and dairy. I added soy and sugar to the elimination protocol. It wasn’t enough.

You know what was enough? Cutting out food altogether.

Just kidding. But I did cut out many, many more foods. At one time, my elimination list looked like this:

Just kidding. Again. Have you tried going to a party where you can’t eat wheat, dairy, sugar, soy and corn? Because nothing says party like rice and kale, I became a master of RSVP’ing to Evites with a cute “I’ll be there with my own delicious green smoothie and big bowl of brown rice to share!”

Although all of my friends and family are supportive, not everyone understands the nuances of an ED. Some would kindly try to accommodate me at dinners and parties and ask me for a list of foods to avoid. Without fail, I would email the list and my friends would reply with “What the hell do you eat?!”. My answer? “Hopes and dreams.”

After a while, I found it was easier just bring my own food to the gathering and eat it on the sly while I pumped in a back room. That didn’t last long, though. I’m a social creature and need interaction. So, I donned my pump cover and armed myself with a safe-for-me treat and ventured out into the party. People were usually so fascinated or uncomfortable by the pump mooing next to me that they didn’t pay much attention to the weird food I was eating.

Later, when I could manage a night out without pumping every three hours, I brought enough food to share. Then I made it a game. I would try to come up with the tastiest, most decadent ED treat my limited options would allow and then present it as regular food. Pretty daring, right? It worked. My food was always a hit. And I rarely told people the ED backstory because good food is GOOD, regardless of what label you put on it.

Mamas, we make an obscene number of sacrifices for our miniature milk monsters. We wouldn’t have it any other way. It’s okay to be sad to give up our comforts while still being glad to be able to provide what our little ones need. And if the sadness of giving up ice cream or baguettes gets to be too much, replace it with something else that brings you joy. For me, it was something like this Meyer Lemon Coconut Tartlet , and this fun infographic only you will appreciate.

Carrie Saum brings a passion for wellness and over a decade of experience in health care to her clients. A certified Ayurvedic Wellness Counselor (AWC) from the Kerala Ayurveda Academy, she empowers individuals and families to achieve health and balance through time-honored practices. Carrie has extensive first-hand experience in vast array of medical fields. She has a background in paramedic medicine and spent ten years serving in the non-profit sector managing organizations, programs, and orchestrating resources to meet the health needs of people across the United States and abroad in countries such as Guatemala, Mexico, Kenya, and Zambia. She has coached countless clients on topics such as nutrition, weight loss, and stress management. In addition to her work as a wellness counselor, Carrie is a passionate “foodie” and blogs regularly about healthy cooking and nourishing the whole family with The Leaky Boob’s sister site OurStableTable.com and Facebook page. She lives in Portland, Oregon with her husband and young son.

by Carrie Saum

My son, E, has a rare, severe food allergy called FPIES. (I’ve written about it here). Holidays and family gatherings are chock full of well-meaning parents and aunts and uncles and cousins who want to help us keep E safe, but just don’t always know how. Or remember how.

Last Fourth of July, Echo was a busy little guy. He explores and inspects everything. No speck of dust goes unnoticed by him. At the time, we struggled to keep him safe while he picked up every crumb from the floor. It terrified Lance and me. During this time, we visited my family in another state. We prepped them, lectured them, and conducted a family meeting within the first ten minutes of arrival. E needed us to help him be safe. Everyone agreed E’s safety was important and they would help.

My brother was watching TV in the living room a few minutes after our family meeting. He put a can of root beer down on the side table, not thinking about tiny baby hands that find everything they’re not supposed to have in mere nanoseconds. E raced over to the shiny can, grabbed it and pulled it down immediately, dousing himself in sticky caramel colored corn syrup. I freaked out. My brother felt terrible. We immediately hosed E down and scrubbed the soda off of him from head to toe. We held our breath for the next several hours to see if he would react to the corn syrup. (He didn’t.)

In spite of everyone’s best intentions and total agreement to make the holiday and visit safe for E, he still managed to find the chinks in our armor. He wasn’t being naughty, and my brother wasn’t being negligent. Its just part of navigating life and holidays with kids who require extra care.

In our case, this is really important and for some children, it is a life and death concern. But it doesn’t matter if your child has a full-blown allergy, slight sensitivity, or you just don’t want them eating certain things. This is your kid. Your boundaries are important, especially when you are making choices to keep your child safe or healthy.

Here are a few ways to bring a little sanity during to your holiday season, and navigate gatherings when your kid has a restricted diet or you’re just not ready for them to have certain foods introduced to their systems just yet.

1.Prepare. E-mail or text every friend and family member attending the holiday gathering a few days in advance. In clear and concise terms, share what your child needs to enjoy a safe holiday. For example, “Hi Loved Ones! Just a quick reminder that Buddy is allergic to Red Dye # 5, and throws up when he eats foods containing this dye. PLEASE DON’T FEED HIM ANYTHING AT ALL without my permission first, otherwise we could end up celebrating in the Emergency Room instead of around the table with you. If you want to know more about his allergy, please read (link), or give me a call. Thank you so much for helping us keep our guy safe! Also, it would be a huge help to us if you would be willing to keep an eye out for stray food ”.

2. Enlist help. When getting together with friends or family that may not be familiar with the guidelines you have for food when it comes to your child(ren), have a family meeting early in the gathering and ask them to be guardian angels. My eight year old niece, Sav, saw E reaching for the soda and alerted us to what was happening the second before it happened. She gave us a half-second head start, which is all we needed to ensure E didn’t get his fingers in his mouth. She appointed herself as his guardian angel and for the rest of the holiday weekend, she alerted us when he found a stray french fry and gently took it from him while explaining to him how it could hurt him if he ate it. Sav felt important and E had the added benefit of another person watching out for him. Plus, he followed her around like she hung the moon and they formed a very special bond.

3. Babywear. Wear your baby or toddler as much as possible. The easiest way to keep your kiddo safe is to keep them close. If they like being worn and are small enough, wear them. Trade off with your partner, or another trusted family member. I know it’s not ideal and many littles won’t love this for the duration. But even if it’s just for 30 minutes, it’s 30 minutes you don’t have to worry about their safety. It reduces your anxiety, which will reduce theirs in turn. You can also take that opportunity to scope out gathering for potential problems.

4. Be firm. Don’t be afraid of hurting people’s feelings. My sweet mom, (who would never intentionally do ANYTHING to harm her grandson), once gave E a coffee can to play with. She forgot to wash it out. He had the lid off and was shoulder deep in Folgers remnants before I could even process what he had. I instantly became upset with her, and although I regret the level of reaction now, I don’t regret reacting. I apologized to her later for my tone, but not for reacting. She can’t be cavalier with food, and although I never believed that was her intention, I was ready to stay somewhere else if it meant my son would be safe. I told her this with as much kindness and clarity as possible. I know it hurt her feelings, and it made me sad knowing I hurt her. But her feelings were secondary to my son’s health. Even people who love our kiddos don’t always connect with the vigilance required for FPIES and other allergies and health concerns. Although I never WANT to hurt anyone’s feelings, and typically find a kind way to state (or restate) boundaries, sometimes it happens and I try to work it out with the offended party pretty quickly.

5. Party later. Celebrate in your own way. When all else fails, stay vigilant during your festivities. Then crack open a bottle of wine or martini shaker when you get home after the kids are asleep. If you don’t drink, it’s no problem! You can still mix up a relaxing mocktail. My favorite? Kombucha Christmas Cosmo. Don’t worry, you don’t have to come up with a recipe on your own, you can find this easy recipe and more at OurStableTable.com.

Carrie Saum brings a passion for wellness and over a decade of experience in health care to her clients. A certified Ayurvedic Wellness Counselor (AWC) from the Kerala Ayurveda Academy, she empowers individuals and families to achieve health and balance through time-honored practices. Carrie has extensive first-hand experience in vast array of medical fields. She has a background in paramedic medicine and spent ten years serving in the non-profit sector managing organizations, programs, and orchestrating resources to meet the health needs of people across the United States and abroad in countries such as Guatemala, Mexico, Kenya, and Zambia. She has coached countless clients on topics such as nutrition, weight loss, and stress management. In addition to her work as a wellness counselor, Carrie is a passionate “foodie” and blogs regularly about healthy cooking and nourishing the whole family with The Leaky Boob’s sister site OurStableTable.com and Facebook page. She lives in Portland, Oregon with her husband and young son.

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The Leaky [email protected]@b does not intend to dispense medical advice and should not be considered medical advice or counsel. If you have a question about your health or the health of your child please consult your physician. The stories and information here are anecdotal and of personal opinion only and should not be used as a substitute for medical help.